Testing positive for XMRV: A personal survival guide needed

A few weeks ago, I told one of my MA committee advisors about XMRV and gave her links to the Science article and two New York Times articles. We were speaking of it in an academic context. I added later that I was in two XMRV studies.

I emailed her yesterday about testing positive. I also emailed her the link to CDC's XMRV page. Can you believe it? I could give out information from the CDC on chronic fatigue syndrome and be happy about it. That is truly amazing.

Here is her response which I liked very much.

Well. I'm very glad you got the results back! Somehow it feels hopeful--it's identifiable, recognized, and being addressed as a serious health problem. That must feel incredibly validating. Thanks for the link. I'll check it out this afternoon after class.

I am also very concerned if I've passed it to my kids. I also breast-fed because I thought it was best. My oldest until he was 3 years. Interestingly my youngest weaned himself at 16 months just when I started getting very sick. I have wondered if infections in my milk started increasing and he instinctively knew he didn't want it. Luckily neither of them are symptomatic at this time. Hopefully they will come up with good treatments in case they ever do get sick.

Congrats, by the way, on your test result. It's not an easy thing to receive, I know, but good to have the info and know what you need to look into and deal with.

Best wishes, Sunny

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Hi Sunny and Gracenote,

I haven't been tested, so take this with a huge grain of salt, but I would try as hard as possible not to worry, or to stress about your results and if, or whether you may have passed it on to your kids...or anyone.

We all do the best we know how at the time we do things, and I for one, think breast feeding is the admirable thing to do (and I'm sure most doctors favor breast feeding over baby formulas).

I also I don't think anyone knows if it's even possible to transmit XMRV by breastfeeding. Also, don't forget that breast milk also contains many immunoprotective factors...very critical compounds not found in 'fake', store-bought baby formulas.

Also, it might be helpful to keep in mind that approximately 10 times as many 'healthy' people have been found to have XMRV compared to the CFS population, as Cheney discussed in his talk with Dr. Mikovits. So perhaps there is something else...or some THINGS...that work with XMRV...other triggers...that lead to CFS/ME.

I just found out that I'm positive. I don't know how to react, really. The fact that something's wrong with me isn't in doubt. But I would certainly prefer not to have a disease-causing retrovirus that hangs out in your reproductive organs. I wish we knew more, simply. It feels like this very critical piece of information --except we don't know any damned thing about it. And I would personally like to extend a giant middle finger to the CDC, the Brits, and most of the rest of the world for tilting at psychosomatic windmills while this thing went around unchecked.

Anne, I am sorry, and then yet, I feel there is hope for those that test positive, for there will be good chance of recovery with treatment, in my opinion. We just need to wait and see what it all means. What I know is the pro-psycho will leave us ME/CFSers alone.

I just found out that I'm positive. I don't know how to react, really. The fact that something's wrong with me isn't in doubt. But I would certainly prefer not to have a disease-causing retrovirus that hangs out in your reproductive organs. I wish we knew more, simply. It feels like this very critical piece of information --except we don't know any damned thing about it. And I would personally like to extend a giant middle finger to the CDC, the Brits, and most of the rest of the world for tilting at psychosomatic windmills while this thing went around unchecked.

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anne Did you just find out you are positive? As in today find out?

Do I say Welcome to our exclusive group? Congratulations? I'm so sorry? Or maybe all of them?

Here's a Welcome hug and a Congratulations hug, and a Comfort hug. That should cover it.

​

I'm feeling solid. I don't know how else to describe it. It's settled. I have XMRV. No more waiting. No getting a false negative and needing to wait for another test. It's done. I am positive.

There is still a lot I don't know Whether I have an active infection; what treatments will be available; if being so old (I just had another birthday so am now ancient :Retro smile and being sick so long will mean that treatment will have less chance of working. This I won't know for some time.

But I'm still glad that I know that I'm positive. I feel settled and solid. This is the best bad news that I've gotten in a long time.

I just found out that I'm positive. I don't know how to react, really. The fact that something's wrong with me isn't in doubt. But I would certainly prefer not to have a disease-causing retrovirus that hangs out in your reproductive organs. I wish we knew more, simply. It feels like this very critical piece of information --except we don't know any damned thing about it. And I would personally like to extend a giant middle finger to the CDC, the Brits, and most of the rest of the world for tilting at psychosomatic windmills while this thing went around unchecked.

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Anne, sorry that you have joined our little group. It's a two edged sword sort of thing, good but bad. I agree with Gracenote that it's wonderful to get a positive result the first time so we don't have to deal with whether it was a false negative, having to retest, etc. Now we know we have it and can focus on the next steps, not getting bogged down in whether we do or don't have it. But of course, even being as sick as we are, who wants to hear they have a life-long potentially very nasty retrovirus that there's no set treatment for yet? The good news is that research and clincial trials are moving very fast, and with a positive test result we can supposedly get in on the clinical trials if we so choose.

I join you in extending a giant midle finger to the CDC, et al. I wasn't terribly pissed at them before finding out I have XMRV (too sick to put energy into being angry) but all my bottled up anger has really come out since I got my + results.

Anyway, just wanted to say I'm sorry and congrats on your big news. It may take a little while to adjust to it but I think it's a very positive step in the right direction toward recovery.

Thank you, Gracenote and Anne and others who have, or will, share on this thread, about what to do in terms of communicating with people with your XMRV results and, more broadly, in having ME/CFS. The reason is that we need not only the science, but how to translate that into social, medical and professional communication.

As Koan expressed so well with her avoidance of her doctor and of even speaking about her illness and limitations, I have been a lot like this too. I have had to FORCE myself to come up with some information, some explanation--but this is trying to gain entry onto a field which is already largely pre-programmed, and a mind set which doesn't allow for what I try to convey, or not without critical distortions. We know this.

But here is another aspect of my problem. I do not like identifying myself with an illness, a physical condition which will be interpreted as an identity, or a claim to an identity. I don't like defining myself as ANY identity: I am this; I am that. I am NOT, is more like it! No such delineation feels valid, or even interesting to me. You know, I never even used to like naming animals because I did not like circumscribing them with some name's suggestion about who they were. Identities have an intrinsic falseness to me, like stereotypes and caricatures, stick figures--

I also don't like another aspect: I'm sick therefore I need help and special treatment. I sure don't like that one. The victim identity repels in as much as it can be used to manipulate others, to gain attention and power. I dislike others doing this and would feel it unethical to act in this way. Even when I need help, it is very hard to ask for it, because I don't want to feel demanding, to put myself in that role...

Then there is the irony that if and when I really do need help, and try to ask for it, others don't believe me--because I don't do so in an effective, theatrical style. I don't know how to play the part! So I appear to be faking when I couldn't be more sincere. This speaks, very ironically, to how much of social communication is theatre and acting. I got a bellyful of fakers and manipulators in earlier days, people who pretended to need help when they didn't, while at the same time I did need help but didn't get it because I wasn't successful in the portrayal game.

But this theatre and acting skill, this communicative ability can be used to convey what is truthful, just as it can what is false. I see I have as much a right as others to pick up this tool and use it....The ethical question is, Is it coming from a truthful place and going to a truthful end?

But, now to address our question practically: I work out my communication ahead of time, as we are doing here. I practice it mentally, and even emotionally. So then I am prepared to come out with it. I control my part of the conversation so that I make and hold a space for what I want to say, and then I am clear. I define the context necessary to express the content I need to convey, and do so as clearly and simply as I can.

Probably has taken 12 years before I started trying to do this. Now I am at 15 and doing much better in effective communication. It is analogous to being on the tennis court finally, now, in the game, whereas before I was either on the sidelines or completely invisible.

This is all important stuff, and thank you all for helping us work it out!!!

Sing

Too far to one side is being a loud show off and too far to the other is being out of sight

QUOTE FROM SING: But here is another aspect of my problem. I do not like identifying myself with an illness, a physical condition which will be interpreted as an identity, or a claim to an identity. I don't like defining myself as ANY identity: I am this; I am that. I am NOT, is more like it! No such delineation feels valid, or even interesting to me.

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Sing, I appreciate your comments. I'm too tired right now to do more than just respond to this small piece of it.

I am not Chronic Fatigue Syndrome, or ME/CFS, or CFIDS. I have CFS. I have fibroyalgia. I also now know I have XMRV. It is just one aspect of what I am dealing with in my life. The labels don't define me any more than I let them. Sometimes, because I have CFS, I may need to ask for help or services or medication or understanding. Sometimes, because I have CFS, I may be more available to listen to you, understand you, suggest some useful options for you.

I can also say I am a woman, I am a mother, I am a grandmother, I am a redhead, I am getting OLD (although the getting OLD part . . .), and not let any of these things define me. I am also a student, a really bad liar, a person who is mostly homebound, a good friend, a person on disability and numerous government services, and someone who LOVES her MacBook.

When I got divorced, I took back my maiden name and changed my first name. For this forum, I chose the screen name gracenote. I found choosing my own names to be very empowering.

By using the label CFS (as bad as it is), we are able to find each other on this forum. This label, CFS (as bad as it is), gives us researchers and research that we can agree with or discard, even as it impacts our lives for good and ill. It gives us a way to talk about our symptoms and share with each other what helps. It helps us find commonalities, engender support, and rally around a cause.

Could we have what we have here without labels?

Of course, lets get rid of the STUPID label chronic fatigue syndrome as quick as we can! I think we can all agree on that.

First of all, thoughts and best wishes to those with a positive XMRV result.....and same to those with a negative one!

Personally, I'm jealous of the postives right now, but I may change my mind when I know all the facts/implications. I have not been tested, but I fear a negative more than a positive. I've already lost nearly 20 years to this thing, so I don't think I'd be too scared by a positive result...maybe. Although I should say that I'm lucky to have still led quite a full life in that time, albeit an ill one (every day).

There's a thought for a thread - does anyone have a day when they feel "normal" (i.e. pre-ME-like). Not me. Sorry wrong thread.

As we get more testing the picture will emerge and we'll learn the truth. I have my guesses what this will be but time will surely tell.

Best wishes (I got ticked off for saying "love", so have to be careful) to all

I think that would depend on how you define musician. Here is something I wrote for a school project.

My heart is a song that I long to sing.
I shall always sing.​

Albert in Finding Your Voice​

I am a songstress who lost her verse. A singer who lost her voice. A musician who lost use of her instrument. The melody died. The music stopped. More precisely, it never was fully found.

I've been on a lifelong search to find my song. I've been hungry for music that expresses my longings, my hurts, my joys, my very soul. I've listened for melodies and harmonies that call to me, that stir me, that heal me. I've looked for lyrics that speak to me and that speak for me. When I haven't found the songs that I long for, sometimes I write them. Sometimes they write themselves through me. Sometimes I will sing them to you. And sometimes you will sing them, too.​

please keep this topic going, i am new & very much need to hear more about this... thanks

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Hi danib,

Welcome to the forums.

I keep wanting to get back to this tread and this topic, but I've been having a bit of a tough spell. I feel too tired to get my brain around it all, so have just set it aside for now.

From following this topic since October, it feels to me like there is SO MUCH happening all the time around XMRV that it's tough to keep up. If you have specific questions, many of us would be happy to answer them.